A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.

Wednesday, August 27, 2014

Lucky

Do you know how lucky I am? I do.

I watch my younger daughter every single day and I marvel at how lucky we are. We’re lucky that she’s here, she’s alive. Babies born with 5p- syndrome sometimes don’t make it much past birth. This is devastating to me. They sometimes aren’t strong enough to live outside their mother’s body.

But Olivia cooked nine days past her due date, she grew to five whole pounds and added two whole ounces to that and she made it. Sure, she spent eleven days in the NICU but she’s here, she’s gloriously alive.

That alone is reason enough to acknowledge my luck.

But my luck (Olivia’s luck?) didn’t stop there. We brought her home and she grew and while she was delayed in almost every area, she was also growing, learning, showing the world what she could do.

We started therapies for her when she was a year old. Again, we got so, so lucky. We found wonderful, loving therapist who took Olivia from a lump of a baby who would stay right where you put her to a child who sat up at a year old, crawled at seventeen months and walked at twenty-nine months. She started talking six months after she started walking.

All the research said she wouldn’t be able to talk. One of the biggest affected areas of 5p- syndrome is speech. But she talks. There are days when I long for a moment of silence as she chatters on and on about her imaginary friends.

But then I stop longing for her to stop talking and I sit in wonder at how lucky we are. Olivia can TALK to us. She can get up from one part of the room, WALK over to where I am and tell me what is on her mind. She can narrate intricate stories and remember details from months ago (though she always says, “Remember last week when you/we/I…Everything happened last week as far as O is concerned. I will actually be a little sad when she outgrows this.)

We got pretty darned lucky medically too. She’s had a few issues, but nothing major. She had to have tubes in her ears at eight months old but that took care of the constant infections. She’s had random colds/pneumonia/strep but those things are knocked out with antibiotics. She’s had her heart, lungs, kidneys and brain scanned one way or another and every single doctor reports that she’s perfect.

And she is. She’s my perfect girl who gets annoyed by the seams in socks and wants her hair just right.

When I got home last night, she ran to me to express exasperation at some of the girls in the other first grade class, “Do you know what they do!?” she wanted to know.

I told her that I did not know what those girls do but I’d love for her to tell me. She continued, “They bring Barbies from home and play with them at recess!”

She was stunned that this was even a possibility. She went on to say, “The teachers don’t even say anything to them.”

I managed not to laugh at her outrage and instead asked, “Do you want me to send a note to your teacher to ask if you can bring a Barbie to play with at recess?”

She thought about this for several minutes before answering, “No, I just like to swing.”

And that was that. I am so lucky that she can express outrage at the idea that a rule is being broken. We are lucky that she understands the rules and wants to abide by them. We are lucky that she notices her peers these days, watches them and perhaps someday will speak to them, play with them.

But even that feels greedy. We’ve already been so lucky just to know this girl, to love her, to watch her learn and grow and walk and talk. She’s happy and for that I know just how lucky I am.

I must tell you again that I just love the fact that you blog...these will be priceless to your girls much later in life. I would change only one aspect of your writing...and maybe your wording...and that is a hard look at "you are NOT 'lucky'; you are BLESSED." That you and Tom have been chosen to be parents of this 5p- child and her sister is something I think you could more wrap yourslf around. When I see you and your girls, Tommie, I smile with such satisfaction that our Creator appointed YOU for this chore of special girls. That O progresses so well....what strides in the medical field, and what hope to other mothers to stand up and help their children grow instead of 'accepting' the history of 'these kids can't do, won't learn, won't speak'. I am so proud of you and hope you FEEL as blessed as I believe you are. Imagine...."God chose you to be the mother"...He just have His eye on you! :) I love your stories, keep up the good work!